Special Issue on: Facilitators and Barriers to Positive Experiences for Families of Individuals with Autism

1. Fodstad JC. Facilitators and Barriers to Positive Experiences for Families of Individuals with Autism. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):265-266.

Lien vers le texte intégral (Open Access ou abonnement)

2. Makino A, Hartman L, King G, Wong PY, Penner M. Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):267-284.

The purpose of this review was to identify the quantity, breadth, and methodological characteristics of literature examining parent perspectives of autism spectrum disorder diagnosis, synthesize key research findings, and highlight gaps in the current literature. A systematic search was conducted for the period January 1994–February 2020. One hundred and twenty-two articles underwent data extraction. The majority of studies took place in Europe and North America in high-income countries. Over half of the studies used qualitative methodology. Four key components of the diagnostic experience were identified: journey to assessment, assessment process, delivery of the diagnosis and feedback session, and provision of information, resources, and support. Themes of parental emotions and parental satisfaction with the diagnostic process were also found.

Lien vers le texte intégral (Open Access ou abonnement)

3. Lee JD, Meadan H. Parent-Mediated Interventions for Children with ASD in Low-Resource Settings: a Scoping Review. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):285-298.

As a global health concern, autism spectrum disorder (ASD) is known to affect millions of people regardless of their demographics. Children with ASD and their families in many low-resource settings (LRS) around the globe are reported to experience a multitude of barriers. Parent-mediated interventions (PMI) may be a viable treatment model in these LRS. Therefore, a scoping review was conducted to provide an overview of PMI-related literature in LRS. A total of 12 studies representing 10 different countries were reviewed. This review revealed strategies used to train and coach parents, target skills for children, and parents’ perceptions toward PMI in LRS. It also revealed the critical need for additional considerations for interventions adapted in these parts of the world.

Lien vers le texte intégral (Open Access ou abonnement)

4. Rios K, Burke MM. Facilitators and Barriers to Positive Special Education Experiences and Health Among Latino Families of Children with Disabilities: Two Systematic Literature Reviews. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):299-311.

Families face systemic barriers when deciding on educational services for their children with intellectual and developmental disabilities (IDD), including autism spectrum disorder (ASD). Further, caregiver health and well-being is critical for supporting children with IDD. In addition, research has shown a negative correlation between the quality of special education experiences and caregiver health and well-being. However, the barriers and facilitators to positive special education experiences and health are unclear for Latino parents of children with IDD. By identifying barriers, interventions can be created to ameliorate such issues. By identifying facilitators, interventions can be developed to capitalize on the strengths of Latino families. The purpose of this study was to identify barriers and facilitators to positive special education experiences and health among Latino families of children with IDD. Via two systematic literature reviews, 28 studies were identified. Barriers to positive special education experiences included: cultural divergence, limited access to resources, stigma, and lack of access to special education knowledge; facilitators included: understanding special education services, parent-school communication, and parent support. Barriers to health included: socioeconomic status and certain characteristics of the child with IDD; facilitators included: family support and parent support. This review has implications for research and practice to both improve the quality of special education experiences as well as to promote caregiver health.

Lien vers le texte intégral (Open Access ou abonnement)

5. Kim I, Wang Y, Dababnah S, Betz G. East Asian American Parents of Children with Autism: a Scoping Review. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):312-320.

The number of Asian American children with autism is steadily increasing. Previous research reports that parents of children with autism experience higher stress compared with parents of typically developing children. Immigrant families of children with autism are particularly vulnerable to poor access to healthcare, social services, information, and other supports. This scoping review examined the current literature focused on East Asian American families raising children with autism, with an emphasis on study characteristics and overall findings. We identified nine articles that reported on the caregiving experiences of this population. Our review revealed that extant studies focused on East Asian families used limited research methods and small samples. The studies we reviewed found variations in the ways in which East Asian parents understand autism, navigate services, access available community and family supports, and experience stress.

Lien vers le texte intégral (Open Access ou abonnement)

6. Madarevic M, Van Leeuwen K, Warreyn P, Noens I. Conceptualisation of Parenting in Research on Young Children with or at Elevated Likelihood of Autism: a Systematic Review of Observational Measures. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):321-333.

Research on emergent autism spectrum disorder increasingly uses observational measures to investigate parenting of young children with or at elevated likelihood of autism. This systematic review analysed 21 papers narratively, including 13 unique ‘coding approaches’ and 63 parenting constructs. Through a comprehensive consensus decision-making process, parenting constructs were classified under nine overarching categories, identified based on prior categorisation: Warmth, Responsiveness, Scaffolding, Proactive Control, Intrusiveness, Negativity, Dyadic, Other, Multiple. We found a large heterogeneity in observational measures, and descriptions of parenting constructs lacked uniformity. The complex categorisation process demonstrates the need for a solid conceptual framework that can inform theory and practice. This review provides a first step, but further research should investigate applicability among young children of different ages.

Lien vers le texte intégral (Open Access ou abonnement)

7. McCrimmon AW, Gray SM. A Systematic Review of Factors Relating to Parental Satisfaction with the Diagnostic Process for Autism Spectrum Disorder. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):334-349.

Diagnostic assessment for autism spectrum disorder (ASD) is a complex and often stressful process for parents. This systematic review synthesized results of 26 articles that reported on factors related to parental (dis)satisfaction with the diagnostic process for ASD. The results are described in terms of factors related to satisfaction and those related to dissatisfaction (with some overlap between these), in the context of temporality within the diagnostic process. Subsequently, factors are described in terms of those that can be directly influenced by clinicians and those that are outside of direct clinician control. Implications of the findings and directions for future research are provided.

Lien vers le texte intégral (Open Access ou abonnement)

8. Liao C-Y, Ganz JB, Vannest KJ, Wattanawongwan S, Pierson LM, Yllades V, Li Y-F. Caregiver Involvement in Communication Skills for Individuals with ASD and IDD: a Meta-analytic Review of Single-Case Research on the English, Chinese, and Japanese Literature. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):350-365.

The current meta-analytic review analyzed 43 studies published in English, Chinese, and Japanese to determine the effects of caregiver involvement for promoting communication skills of individuals with ASD and IDD. Tau-U effect sizes, the Kruskal-Wallis H test, and the Dunn post hoc test were employed to calculate for moderator analyses: child age, settings, service delivery formats, and dosages of services provided to caregivers. The overall effect size for family involvement had a moderate effect on child communicative outcomes, as well as on child ages, settings, delivery formats, and dosages of services provided to caregivers of individuals with ASD and IDD. A statistically significant difference was found in children’s communication outcomes between the four dosage groups of services provided to caregivers.

Lien vers le texte intégral (Open Access ou abonnement)

9. Lim N, O’Reilly M, Sigafoos J, Lancioni GE, Sanchez NJ. A Review of Barriers Experienced by Immigrant Parents of Children with Autism when Accessing Services. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):366-372.

Immigrants have poorer health outcomes due in part to limited access to health care. Children with autism spectrum disorder (ASD) who have immigrant parents are diagnosed at a later age and those whose parents have limited English proficiency receive fewer hours of services. What contributes to these health care and support services disparities? This review examined eight qualitative studies published between 2010 and 2020 that explored barriers experienced by immigrant parents of children with ASD with regard to accessing diagnostic and/or intervention services. Key barriers included long wait times, language barriers, and limited health literacy. Recommendations for practice and future research are discussed.

Lien vers le texte intégral (Open Access ou abonnement)

10. Deguchi NK, Asakura T, Omiya T. Self-Stigma of Families of Persons with Autism Spectrum Disorder: a Scoping Review. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):373-388.

This review aimed to understand the dimensions of self-stigma that are unique to the families of persons with autism spectrum disorder (ASD) and the conditions in which self-stigma in families of persons with ASD arises. We reviewed the self-stigma dimensions in families of persons with ASD. Seventeen studies met our inclusion criteria and provided qualitative information on the dimensions of self-stigma. The identified dimensions were social misunderstanding, negative prejudice, social rejection, isolation, emotional reactions, and stigma management. The dimension of social misunderstanding was unique to families of persons with ASD. This review adds insights into self-stigma theory, and, by clarifying the dimensions of self-stigma, suggests areas for future self-stigma research among families of persons with ASD.

Lien vers le texte intégral (Open Access ou abonnement)

11. Ghanouni P, Hood G. Stress, Coping, and Resiliency Among Families of Individuals with Autism: a Systematic Review. Review Journal of Autism and Developmental Disorders;2021 (2021/09/01);8(3):389-402.

The rate of diagnosis for autism spectrum disorder (ASD) is on the rise. Families of individuals with ASD usually face challenges in raising their children. The coping strategies that allow for caregivers to prevail and be resilient in this situation need to be better understood. Thus, this review aimed to compile evidences related to resiliency and coping strategies among families of individuals with ASD.

Lien vers le texte intégral (Open Access ou abonnement)